fibromyalgia or thyroid? GPs no help.

[notpoodle]

I was diagnosed with fibromyalgia by a rheumatologist about 3 years ago.

Since then my symptoms have worsened a lot and I have periods of debilitating exhaustion as well as the usual aches and pains, feeling freezing cold, raynaulds, dry skin etc.

I've started questioning my diagnosis over the last year of so, mainly due to the fact GPs are as helpful as a chocolate teapot and rheumatology discharged me. I have asked GP for tests to rule out underactive thyroid and full blood count, ESR, Vitamin D etc were tested and GPs are adamant they are 'normal' despite some being bottom of the range or slightly over. It was a GP who actually looked at my list of symptoms and told me I have a thyroid problem but my results would have to be 'way out of range' for her to treat me.

I have another GP appointment next week and am determined to try and get referred to a consultant who may be able to help me but I have no clue what or who to ask to see.

Does anyone with experience of this have any advice please?

if I were you, I would get yourself over to the ThyroidUK forum on Health Unlocked - they'll sort you out, but they will want you to get a print out of those blood test results, with the reference ranges.

For a GP to say that you have a thyroid problem and then say she cannot treat you is appalling.

If your vitamin D is low then this can give you the symptoms of fibromyalgia - that would be a basic thing to start with.

despairs

god it is so shit
sorry
not helpful but the years of posts like these and lives being ruined is just appalling

as rockinD says, thyroid uk are good. phone up or pop in to gp reception and get copies of your blood test results. have you been tested for thyroid antibodies?

Thank you for your replies!

I really don't know what to say to GPs who refuse to help me, it's just so obivous they don't care that I'm getting to the point of feeling almost like giving up now.

I paid for private blood tests as GP would only do TSH and refused to test my Vit B or iron as 'I'm not anaemic'. I have copies of the NHS bloods as I asked for a print out. Was so shocked that the 3 GPs I've seen so far have refused to do anything to help despite some of the results being out of range.

My vitamin D had been low for the last 3 years (since it was first tested), it's now at 81 with the range being 80-150. I've bought a 300ug spray as my vit d tablets obviously weren't working.

I'll take a look at the thyroid uk site, thank you for the recommendation. I don't have any money to pay to see a private GP, I just don't know where to go from here, can I demand NHS treatment?

I was in a similar situation to you almost 3 yrs ago and can sympathise. Turns out I actually had vitamin D deficiency and kephalis of my neck noticed in a and e when my shoulder locked. I also have an allergy to meat, wheat and dairy this was only noticed by an astute you trainee doctor at the immunology and allergy centre. I took dd to for her nut allergy and he asked if there was a history of food allergies I had to keep a family diary and he ran further skin prick test on me and dh who is allergic to shellfish.
As soon as I cut out the dairy, wheat and meat the pain and stiffness reduced. I still have problems because of my neck and have just found out I have scoliosis.
Go get the thyroid problems checked out properly, I lived with the wrong diagnosis for 8 years. Looking back I should never have settled with being fobbed off and neither should you.

For the record, your GP cannot refuse to give you a copy of your test results - under the Data Protection Act, this is your data and you are fully entitled to it. Any GP who is difficult over this should be reported to the CCG who will tell you what your rights are and how to handle this.

Your GP should know that vitamin B12, folate and iron deficiencies go hand in hand with hypothyroidism and need to be fixed before treatment will be successful.

You need a good endocrinologist - again ThyroidUK has a list. You can be referred on the NHS.

Thank you for your replies everyone.

It seems to me that the GPs I've seen are clueless combined with not caring in the slightest that I feel ill. One of them actually smirked and laughed when I queried the fact my Vit D is still only just in range after 3 years of supplimenting and a good summer, his only suggestion was to retest in the winter.

Can I insist on being referred to an endocrinologist? Or can I insist on trying some thyroxine?

I really don't understand why GPs keep trying to get me on antidepressants yet won't recognise any of my physical symptoms.

I'm reading the forum you recommended and there are so many poor people in the same boat, it's criminal!

notpoodle I'm in a very similar situation-long history of varying problems and a diagnosis of me.

What I've just done is have private blood tests done (full thyroid panel) and i sent a copy to my gp with a letter asking for a referral to an endocrinologist..I've just paid to see an endo privately although have now been transferred back to nhs (I couldn't afford it but am on verge of losing job so i stuck it on credit card it vague hope it would help) The blood tests were repeated by him and showed that I have high antibodies, low vitd so have started on thyroxine. I don't know if the medication will help but my understanding is my thyroid is likely to stop working completely sooner or later so its probably a useful thing to have done even if I don't feel much better right now.

awaywego1
I hope you start to feel better soon.

I had the full thyroid panel done privately too (I had to use my overdraft so I sympathise!) but all my results are 'within normal ranges' so GP doesn't want to know.

My TSH has crept up from 2.8 to 3.08 in 2 weeks so I'm hoping it continues to do so quickly otherwise I'm kind of stuck.

The way I feel at the moment, the GP is going to get some stick when I see them!